Normal Is Overrated

[Note: This entry was originally posted at DailyKos; the original version of the post, with its comments, can be found here. I’m reposting it on my own blog, with some slight modifications so as to make it more timely and to reach an even wider audience.]

Imagine, if you will, that an organization existed by the name of “Womanhood Speaks,” which, on the surface, appeared to be in support of women’s rights.

Now imagine that the governing body of this organization only included members of the male gender, with not one female represented in its ranks. Imagine that its actual aim was to create a registry of all females and force them to become more masculine, completely disregarding the fact that a majority of females were perfectly content with their womanhood and even found it to be advantageous. Imagine that members of its leadership appeared on popular TV programs talking about the epidemic of womanhood and how it needed to be eradicated.

Doesn’t sound too appealing, does it?

This hypothetical situation may seem utterly absurd, but for one segment of the population— albeit a much smaller subset than that identifying as female*— it isn’t all too far from reality.

I’m speaking of autistics, and more specifically, of the organization known as “Autism Speaks.”

Such a deceptive name. After all, a fair number of autistics are unable to speak; the name Autism Speaks suggests an organization that is willing to speak on their part for greater acceptance and improved services that might enable them to more actively participate in the world while still being able to benefit from what strengths autism might provide.

And autism does have its associated strengths: a dogged persistence; an ability to look at matters objectively and logically; an ability to focus on details that others might miss entirely. If we get rid of the “bad” aspects of autism, we’re also likely to get rid of these traits that, to be honest, can be extremely advantageous in certain lines of work.

In truth, however, Autism Speaks is not very amiable to autistics.

First off, despite the group’s ostensible aim of speaking for autism, there is not one single autistic on its board of directors, or otherwise represented within the ranks of the organization. There are plenty of autistics who are fully able to advocate for themselves, who are fully able to express what sort of support they would benefit from, and would have benefited from as children; however, Autism Speaks wants very little to do with them.

Secondly, and more importantly, the public face of the organization belies its true intentions. Perhaps most notably, Autism Speaks recently allied with another organization that’s also somewhat infamous in autism circles, an organization by the rather presumptuous name of “Cure Autism Now.”

(Just for clarification’s sake, I should point out once again that, though I protest cures for autism, I am not against seeking services and support to aid autistics, or even to ease the lives of parents of autistics. This seems to be a very common misunderstanding; see, for instance, this blog post by autistic advocate Joel Smith on that subject.)

Indeed, I’d go so far as to say that some significant members of Autism Speaks’ leadership simply don’t understand the point of view of autistics.

Take, for instance, the case of Alison Tepper Singer, the vice president of communications and awareness for Autism Speaks, who was also prominently featured in “Autism Every Day,” a fundraising film made by her organization. In one rather famous— and controversial— scene, Singer describes a moment in which she was so exasperated, she had seriously contemplated driving off a bridge with her autistic daughter. A pretty callous thing for any parent to say, but particularly so in front of the child being described, as was precisely the case in this video. Should I mention that the child in question is clearly trying to show affection toward her mother, and being shrugged off, mere seconds before this statement is made?

For those who wish to watch the video in question and see the evidence for themselves, I’m not going to give that video any greater Google ranking by directly linking to it, but a link can be found in Wikipedia’s article on the film, which also discusses some of the criticism thereof.

And if you think this sort of rhetoric has no effect, tell that to the family of Katie McCarron, a three-year-old autistic child from Illinois who was suffocated to death by her mother slightly over a year ago. It may be mere coincidence, but it’s worth noting that this murder occurred just four days after the initial release of “Autism Every Day,” as pointed out by Kristina Chew of Autism Vox. Chew also quotes Katie’s grandfather Mike, who has no kind words for so-called “advocates” of the Autism Speaks sort. There’s not even the excuse of McCarron’s mother having been an overburdened parent in the vein of Singer; as the Coalition for Citizens with Disabilities in Illinois mentions, Katie had not lived with her mother for some 20 months before the incident. Yet that was the primary spin given to the story by the media: an expression of sympathy for the mother, with almost no attention given to the thoughts of those who were Katie’s primary caregivers.

Yet Autism Speaks has major clout. They’ve allied with popular children’s stores such as Toys R Us and Build-a-Bear Workshop, accepting donations from shoppers there (while not making it quite clear what those donations might be used for). Representatives have appeared on popular TV talk shows such as “Oprah,” “The View,” and “Larry King Live,” presenting a very one-sided view of what life with autism entails— while barely allowing critics the chance to present an alternate viewpoint.

Oh, and one of their biggest promoters by far was Don Imus. Draw from that whatever conclusions you wish; I’m not touching that one, other than to point out that he was no stranger to controversy and that he had a large captive audience.

And they’ve been hitting close to home for me lately, in the literal geographic sense. In Atlanta several weeks ago, the combined force of Autism Speaks and Cure Autism Now sponsored a so-called “walk for autism” that gained a fair amount of local and regional publicity. (An interesting definition of “for,” to be sure, when one of the organizations involved is clearly against autism judging from its name alone.)

And today, Autism Speaks is going to have an even larger audience, made up of NASCAR fans. No, I am seriously not making this up. The race that used to be known as the Dover 400 is being held this afternoon, but under a new name, thanks to the wonders of sponsorship; it is now the Autism Speaks 400. (Insert your own joke about autism and repetitive behaviors here.)

So that is why I’m posting this blog entry. It’s to get the word out from the other side of the autism debate, the one that doesn’t get all the media attention. It’s in the hope that someone, anyone, who participated in the walk might start to have second thoughts about it. And most of all, it is with the hope that others like myself can get the support we need to live in a sometimes frustrating society, not a cure that is forced on us without our acceptance.

Autism Speaks surely doesn’t speak for this autistic— nor do they speak for numerous other autistics and advocates, for that matter.

* This sentence, which originally read “…than that with two X chromosomes…”, was revised on 1 August 2011 upon the author’s realization that not all women have two X chromosomes. Mea culpa! (back)